Horizons I (Amsterdam): Leading Haemophilia Nursing into the Future

Haemnet convened Haemophilia Horizons, a roundtable discussion of the professional and educational issues impacting on the future shape of haemophilia nursing in Europe. the meeting was supported by an educational grant from Sobi. There was a strong focus on identifying the opportunities likely to arise in this changing landscape and exploring ways of working together to enhance practice.

Some 11 Haemophilia nurses from Estonia, Denmark, Germany, France, the Netherlands, the UK, Ireland, Serbia, Sweden and Finland met to share their experiences and explore how they could work together. During the event they:

Described wide variation across countries in Europe in nurse education, clinical practice and access to services for people with haemophilia
Affirmed that haemophilia care is best delivered by a multidisciplinary team, but recognised that in some cases working relationships between haemophilia nurses and doctors may be unsatisfactory and perceived as an obstacle to advancing professional practice
Explored how new technologies are expected to transform haemophilia care, with profound implications for patients and carers, clinical practice and relationships between the professions
Explored how the average age of the haemophilia patient population is increasing and that nurses are likely to play a central role in the management of older people with haemophilia; some nurses already have experience that could be shared more widely
Wanted more haemophilia nurses to liaise and share best practice via networking, twinning and attending professional meetings; the 2018 World Federation of Haemophilia Congress represents a major opportunity to showcase the profession
Described how they see Haemnet as a major resource supporting discussion, education and research for haemophilia nurses.

The participants at the event found the opportunity for discussion with colleagues, space to explore issues on the horizon and share concerns a valuable one and want to meet again to review progress and identify further ways of working together in 2017.

Background and aims

This meeting provided a forum for a series of structured conversations around haemophilia nursing in Europe both now and in the future, and an opportunity to explore how nurses can best work together to shape that future.

In designing and convening the Haemnet Horizons meeting we aimed to:

Increase our collective understanding of the opportunities and challenges facing haemophilia nursing across Europe
Inform the shape and content of the qualitative research needed to better understand the education and support needs of haemophilia nurses in different European countries
Build connections between a cohort of future nurse leaders.

Participants were drawn from a cross-section of countries across Europe:

· Kristiina Karp, Estonia	· AnnMarie Ryan, Ireland
· Maj Friberg Birkedal, Denmark	· Norma Collins, Ireland
· Karin Andritschke, Germany	· Ljiljana Rakic, Serbia
· Malika Makhloufi, France	· Linda Myrin-Westesson, Sweden
· Nanda Uitslager, The Netherlands	· Kristian Juusola, Finland
· Simon Fletcher, UK

All participants were interested in making a difference to nursing practice beyond their locality; each participated in a pre-event telephone based engagement interview to better understand their perspectives and shape the programme.

Meeting Report

By way of an introduction and to begin building connections, participants were asked to select two images from a pile of postcards: one that said something about haemophilia nursing in the future, and one that captured what they wanted to gain from or bring to the meeting.

Participants responded that they see haemophilia nursing across Europe having a common core, that it is on a path and growing, and felt as a profession they want greater and more universal freedom and autonomy to make decisions with patients in the future. Alongside this they shared a need for nurses to take opportunities to learn from and to support each other to the benefit of patients.

In addition, they perceived a need to make connections and to demonstrate the strength of the nursing profession.

“I think we’re all looking for support. I think a lot of people in small centres, big centres, they’re all isolated, no office, no department. So then you need each other to maybe start from scratch or if you’re already up and running, you need each other to manage day-to-day. Or even since we met yesterday, one of our patients is moving to a country where one of the other nurses here is living so we were able to swap that information.”

Building a shared picture of current practice and educational support

During this part of the day the focus was on sharing more information about current practice in each country and building a shared picture of nursing practice in each country

To get the conversation going, Karin Andritsche was invited to share an overview of the arrangements for haemophilia nurses in Germany to maintain and develop their practice. She works in an outpatient setting and leads the German nurses’ haemophilia assistant group, which has developed its own haemophilia nurse curriculum and works with the German doctors’ committee. The group meets twice a year, and certification as a haemophilia nurse assistant (of which there are around 40) is linked to attendance at the meetings. The group is now trying to get an official recognition as specialized nurse (comparable to oncologic nurses, and so on.)..

Following Karin, we explored arrangements in other countries. The 25-30 Dutch haemophilia nurses (who represent six centres) meet twice yearly but have no formal educational process; when one nurse leaves, another one steps in and they learn on the job.

The few Swedish haemophilia nurses meet nationally once each year whilst the haemophilia nurses from Estonia meet and cooperate with nurses from Latvia and Ukraine once a year.

In Ireland, haemophilia nurses tend to have clinical nurse specialist status with a level 8 honours degree and a specific course in haemophilia care. The clinical nurse specialist role is governed by the NMPDU (Nursing, Midwifery professional developmental Unit), which is aligned to an Bord Altranais, the nursing governing body in Ireland. The NMPDU decides on the qualifications required for a nurse to gain the title of a clinical nurse specialist in each speciality.

The haemophilia nurses in Cork manage patients with hereditary bleeding disorders only, which includes care of those with haemophilia as well as other bleeding disorders, although not those with clotting issues, who are seen in a different department in the same hospital. In Dublin, the nurses manage both in one centre.

Regarding education, it is difficult to attend specific education courses on haemophilia care in Ireland. There are very few opportunities and there is no formal structure or group organising this. The Irish nurses travel mainly to the UK to attend short education sessions such as those run by the HNA (the annual HNA conference, the former Sheffield and Canterbury courses) to gain certification/qualification to become clinical nurse specialists in haemophilia care. They also attend conferences internationally such as WFH whenever possible, although funding can be difficult to achieve.

The UK haemophilia nurses (around 120) meet formally each year at their annual conference. They have always taken an active role in education, and have recently introduced a core training course, which is open to all members of the multidisciplinary team.

All of the nurses described having access to international meetings such as those run by the World Federation of Hemophilia and EAHAD, as well as drug-company sponsored meetings.

Participants then engaged in activities designed to facilitate better understanding of:

The range of roles that haemophilia nurses fulfil. These tended to focus on coordinating, educating, coaching, talking, and training. One participant said nurses were “a Jack of all trades, doing a bit of everything for everybody”. However, as well as supporting patients it became clear that a major part of the nurse role is in providing peer support to other nurses and members of clinical teams.
The support available to engage in education and research
The extent of engagement with patients

Responses are summarised in the table (see appendix). Unsurprisingly, nurses appear to have a considerable level of engagement with patients and their families, being the first point of call in almost every situation.

The practice landscape across Europe

Participants were invited to share their national approach to prophylaxis (ranging from none to intensive), extent of multidisciplinary team (MDT) working and the roles seen as core to this team, and the extent of autonomous nursing practice.

The discussion highlighted wide variation in nursing and clinical practice in the management of haemophilia throughout Europe, with differences in ease of access to prophylaxis and treatment for inhibitors and the constraints imposed by costs. Participants noted that patients still have little input into the type and levels of treatment they receive:

“There are arguments around how these treatments are expensive, and so we gave as much as we thought was okay, but we never really ask the patients whether they thought they were getting enough. Or we might ask the patients if they thought they were getting enough and they wanted more, but we didn’t let them have more because of the cost constraints.”

They recognised that there has to be a place for individual patient choice even when that choice might not be what healthcare professionals would consider “best treatment”. Nurses might assume that prophylaxis is the optimal therapy but some older people prefer on-demand treatment. There is also concern that people with mild or moderate forms of haemophilia may be missing out as clinical attention focuses on more severely affected patients.

When exploring the extent of MDT working, participants identified that the teams providing haemophilia care always include doctors and nurses, and the majority have a physiotherapist too. Access to other members of the MDT is limited by national guidelines and funding models, for example, in the Netherlands, some insurance companies will fund only limited access to physiotherapy because it is not formally endorsed by national guidelines. Provision for supporting mental health and wellbeing is more variable. Some teams have dedicated psychologist time; this has clear advantages for ease of referral and access but can also remove barriers to engagement, such as, having to travel a long distance for a separate appointment – even in geographically small countries such as the UK and Ireland, a journey of three hours might not be unusual. Where there is no psychology provision, patients may obtain therapy privately. Social care input is even less uniform, perhaps because it’s value is rarely recognized by those paying for services. These variations are in part due to a growing body of evidence for the benefits of Physiotherapy and the current lack of an evidence base for psycho-social support; a pilot programme to evaluate psychology and social care input to haemophilia services is now underway in Edinburgh and Glasgow.

They described how psychology input is increasingly recognised as important for parents of newly-diagnosed children but is not always welcomed by patients with haemophilia. Young people with inhibitors find psychological therapy helpful. Social care input appears particularly useful for some older people experiencing employment difficulties due to the consequences of their haemophilia and for those seeking benefits.

The group also discussed services not traditionally seen as members of the MDT. Dental care is an example of a service that may be offered ‘in house’ or accessed externally, mainly through community health services or privately. Many community dentists, especially those practicing in areas not having rapid access to secondary care, are reluctant to operate on people with haemophilia. Some specialist centres in a hospital setting have ready access to specialist dental services. For example, in Holland, homecare teams will visit patients prior to their dental appointment to administer a clotting factor.

All participants agreed that these services are a desirable part of a multidisciplinary service but it was acknowledged that cost is a limiting factor: providing funding for these services might mean cutting another, perhaps equally valuable, service.

Within this varying clinical and professional input, it is not surprising that the extent to which nurses practice autonomously is also variable, with a wide range evident between and within countries. This is not simply a linear range of activity characterised by traditional nursing practice at one end and advance practitioner status at the other. Rather, nurses use different skills that combine some aspects of prescribing, referral, monitoring and admission, in some cases pushing their activities to the limit of their remit in an effort to help patients. Everyone in the group recognized the value of working closely with other members of the team yet having to make clinical decisions in professional isolation was a concern for some.

Good practice relies on continuing professional development and participants described how not everyone has access to the time and opportunities needed to access and share best practice as part of their clinical and professional activities. One suggestion put forward was to develop a twinning scheme to facilitate sharing between centres and they saw Haemnet as a readily available resource through which it may be possible to provide a current awareness service. It would be helpful to offer a single Europe-wide CPD facility that unites clinical and professional activity in a single source.

The working relationships between haemophilia nurses and doctors is variable and remains unsatisfactory in many places. Participants shared examples of doctors unilaterally taking decisions or moving MDT meeting times without informing the nurse and other members of the MDT, sometimes with adverse consequences for patient care that the nurse is unaware of, for example, resulting in difficulty with treatment at home. Doctors say they value the nurse’s role but often this is less evident from their behaviour. Even research publications about nursing practice may be dominated by doctors. Participants described how nurses want to be able to demonstrate that their practice is evidence based and recognised that this may not have been communicated effectively to the medical establishment. It was also pointed out that specialist centres may, by fostering a reliance on their knowledge and experience, be unwittingly deskilling and de-autonomising nurses working in smaller centres.

What do new treatment strategies mean for nursing practice?

The group went on to explore where they feel that nursing practice is at in relation to the new treatment strategies and shared their thinking with each other in small group and plenary discussions.

They felt that the introduction of clotting factors synthesised through biotechnology and emerging gene therapies could revolutionise the treatment of haemophilia. This offers the potential for major improvements in outcomes for people with haemophilia but is likely to also radically affect the way services are delivered. These ‘disruptive therapies’ (i.e. treatments that alter current practice) can be administered using once-weekly or monthly dose schedules. Portacaths will be unnecessary. It is envisaged that patients won’t need to attend clinics as often: there will be no need to monitor levels; and tailored prophylaxis will be unnecessary. However, the group recognised that these benefits may not be available to everyone: older people may prefer to continue with their current treatment; some will already be living with its associated complications; and children find subcutaneous injections painful, a problem that imposes additional stress on parents.

Many health professionals believe that the advent of ‘disruptive therapies’ means that services will largely be nurse-led in the future. The medical establishment shares this view, though in practical terms is doing little to support change. The future of haemophilia care will rely on the multidisciplinary team. Nurses want to work with doctors but discussions within the group once again revealed some poor working relationships between the two professions. Some older doctors are obstructing the development of nurse-led services; younger, more recently trained, doctors are more receptive to the principle but do not fully recognize autonomy among nurses. There is much yet to learn about what this really means in practice and the role that doctors will contribute to the MDT in the future. There was a feeling that nurse-led services are being allowed when the medical profession thinks they are a good idea rather than actively supported because it is understood that they benefit patients. It was recognized that doctors working in haematology have a broad case load and it is likely that ‘disruptive therapies’ will free up time for many doctors currently working in haemophilia services although this may be perceived as becoming redundant, with a resulting reluctance to change. There are also more general organizational issues that mitigate against changes in practice, for example, staff reluctance to participate in evening clinics and a lack of financial recognition of a nurse’s advanced practitioner role.

During the sessions recordings from interviews were used as ‘food for thought’ to stimulate debate. An interview with a medical haemophilia specialist was played, during which it was speculated that treatment plans have been too rigid and clinical ambitions too modest – clinicians readily tolerate a certain frequency of bleeding episodes when they should aim to do better. It is expected that this will change with the new generation of treatments, he said. However, assumptions about the benefits of biotechnology products have been challenged by the SIPPET study (N Engl J Med 2016;374:2054-2064), which showed that treatment with plasma-derived factor VIII was associated with a lower incidence of inhibitors than recombinant factor VII. Interpretation of this finding is difficult: one of the recombinant products has been associated with concern about inhibitor development, and several plasma-derived products were used, not all of which are available in every country. To date, the SIPPET findings have had little impact on clinical practice.

Participants explored how haemophilia services, like may services, struggle to be truly patient-focused because the capacity to be responsive to individual patient preferences (personalised care) is limited by

Cost
Historical investment in organization and staffing
The prevailing culture in medical education.

Opinions differ between health professionals and patients themselves about the extent to which treatment should be tailored to individual preference. For example, prophylaxis allows an individual to choose to play contact sport but, recognizing the cost incurred by the state in facilitating this freedom of choice, and asked themselves whether they should be encouraging patients to limit their activities. Current practice is to support most sports except, for example, boxing but should patients accept that their haemophilia closes off some opportunities? The group agreed that there was no definitive answer to these questions.

The group went on to explore the introduction of new treatments, which will present challenges for nurses and patients. There is likely to be strong demand for access to new treatments from patients’ organisations. Nurses have much to learn about the science behind these products and the practicalities of resolving clinical problems such as variable patient response and bleeding episodes. Unlike older treatments, the new generation of agents are a disparate group with important differences in pharmacology and therapeutics. Some health professionals assume that all patients will want a new product but some may prefer to continue a well tolerated treatment – will they be allowed to if their current treatments are more expensive? – and some nurses are sceptical that the promised benefits of these new treatments are genuine. There is also a question of concordance: we know that parents adapt the dose of clotting factor to suit their child’s lifestyle, regardless of medical advice. Some may not welcome a loss of flexibility associated with the less frequent dose schedule of the newer treatments. Participants recognised that they are also learning about how to work with these new treatments, where currently they can advise because they have experience of how the patient responds to their treatment, they don’t yet have this for the new treatments and sharing their experiences as this knowledge develops will be important.

Following a second ‘food for thought’, participants explored the impact of the rising average age of the haemophilia patient population, thanks to advances in care and in particular to treatment with factors. With rising age, there is a growing number of patients with haemophilia who also have other long-term conditions such as cardiovascular disease and cancer. There is currently little evidence – though much opinion – on how best to manage such conditions in people with haemophilia. This new clinical challenge has not gone unnoticed and self-appointed experts are already emerging, though their knowledge is no greater than that of their specialist nurse colleagues.

The group explored how nurses will deal with the implications of age-related disorders in the haemophilia population. Haemophilia treatment is not a single entity: it changes at different stages of life. Haemophilia nurses already support the management of comorbidities to some extent and the group felt it will be important to consider whether additional education about long term conditions and the range of services available is needed and how it can best be provided. In doing so, nurses will be able to draw on their experiences of managing haemophilia in children but no-one should expect nurses to become experts in everything. The group were clear that like other health professionals, they need to be able to recognize signs and symptoms and know when to refer patients and to whom. There may be a role for designated nurse leaders/advocates to be champions in various specialties and a continuing role as co-ordinators working closely with patients and their families.

Much of this activity already falls within the daily routine of a haemophilia nurse but it is clear that the issues associated with ageing will impose new burdens on care management. The group raised a question as to where the boundaries of professional responsibility lie: to what extent should a haemophilia nurse manage a comorbidity, such as, monitoring raised blood pressure before considering a referral? The way in which funding streams are organized will be important in deciding this: for example, in the UK, commissioners encourage clinicians to avoid in-house referrals and instead advise the patient to return to the GP, who will then make a new referral from primary care. The group recognised the importance of maintain strong communications with other specialties and that it will be useful to consider a place for a geriatrician the multidisciplinary team. From the patients’ perspective, there is potential for confusion and it may be preferable for the haemophilia nurse to act as the primary contact and care coordinator. In all of this it is important to remember that the patient’s care pathway does not progress from A to Z linearly but is constantly diverted and redirected.

Overall, the group felt that the changing demographics of people with haemophilia will increase the activities that nurses already do rather than introduce a new specialty.

The group discussed one case in which an elderly inpatient with dementia was in effect denied prophylaxis because the dementia team would not accept responsibility for his haemophilia treatment. As a result, he was repeatedly admitted to hospital to manage the consequences of falls. This is representative of the obstacles imposed by the structural and organisational boundaries within a health care system. Other potential hurdles include deciding which professional is responsible for administering intravenous injections and for training staff to do so.

Among the themes raised during discussions within the group, education, knowledge-sharing and research featured strongly. Participants felt that ways to address should include a Europe-wide focus, networking and twinning and more of the trans-national initiatives that are common in medical postgraduate education but are lacking for nurses. The forthcoming World Federation of Hemophilia congress in May 2018 was seen as an excellent opportunity to showcase the work of haemophilia nurses.

Next steps: opportunities and challenges for nursing

This event was the first step in building greater understanding of practice across Europe and closer working relationships among haemophilia its nurses. Participants were enthusiastic about carrying the project forward and spreading the message among colleagues in their home countries, utilizing existing networks and groups.

It is clear from participants that nursing practice varies within Europe and participants valued the opportunity to meet colleagues from other countries and, face to face, share their perspectives on common challenges. The feeling of “not being alone” in facing the changing landscape was valued. They also felt that collaboration on key issues such as transition would be useful and would tie in with the concept of developing nurse leaders in various areas of practice.

A Europe-wide course on haemophilia nursing (with a generic core and a national component) would be well received. It would need to be accredited at national level by an authoritative agency such as a university (although experience suggests this may be easier in some countries than others) or the relevant national professional body. The potential for including other professions such as physiotherapists should be considered. However, it must be acknowledged that an educational course is demanding for participants and is not necessarily rewarded by increased role recognition and remuneration.

Participants see Haemnet as a valuable forum for professional debate with the potential for supporting even greater communications and sharing of practice across Europe. It was felt that it would be instructive to build on the picture from this event with nurses from each of the European states describing the haemophilia services in their countries. It was also felt that Haemnet could be a good source of information about conferences and other educational initiatives. This would provide the opportunity to develop an educational agenda that reflects the needs of haemophilia nurses rather than the usual meetings hosted by technology and pharmaceutical manufacturers. At the same time, it will be important to work in partnership and not duplicate the work of other agencies such as EAHAD.

The group agreed to meet again in 6 months’ time, and to involve practising haemophilia nurses from more countries.